Sad News

Sadly, before she could get home to Canada yesterday, our friend's mother died, without regaining consciousness.

Dearest friend, you & your mum are in our hearts & in our thoughts.

... So Are the Gerberas

And thank you, too, Evelyn :-D

The Daffs Are BLOOMING ...

Thank you, Susan & Camilla xx

Trying to Book a Weekend Away

Gosh, the Royal Crescent in Bath looks sooooo tempting for a few days' break.

Eye-wateringly expensive, though ;)

Tough Day

A dear friend's mother is unconscious in hospital in Canada, so she's had to drop everything here & run. We're thinking of you, sweetie.

Sue is SOOOO Much Better today

The steroids are working their magic & she's seriously bouncy today. No hyperactivity last night, either, so I'm feeling bouncier, too.

The tightly-budded lilies I bought Sue last week are opening up :-D

Tests All Done

Ater the tests were concluded, we went for a walk. This is a photo of us both in Hampstead, heading back to the train.

She's been given steroids for the pain but took them rather too late in the day ... I think we're in for a hyperactive night!!

Tests Today

We're up at the Hospice now; what a beautiful day.

Not A Good Day

Susan's very confused today (as in toxin build-up). The Hospice has no available appointments; the Macmillan Nurse is on leave & the rest of the Palliative Team is snowed under, so no one can visit; our GP "doesn't have the facilities to carry out the necessary tests" so told us to go to A&E in the morning. The Macmillan Nurse can't understand why the GP won't visit; the Hospice thinks it's crazy for Sue to spend hours at A&E when any tests could be done there ... & me?? I feel like a punchbag & am blummin' exhausted.

And what are those "necessary tests"??

1. Liver function

2. Renal function

3. Chest infection

4. Urine infection

If all those tests are clear, they should schedule another scan.

♫♫On the 8th Day of Christmas ...♫♫

The Covent Garden Tree

Yesterday, Sue & I went to the Apple Store in Covent Garden & spent the best part of the day learning about her Mac Air & my iPad.  Then we went for lunch.  What a brilliant day!! :-D

HAPPY NEW YEAR

May 2012 be a kind year. Heartfelt thanks to all friends & family for your wonderful support over the past 2.5 years. Susan is feeling good & looking great - long may it continue :-D

♫♫On the 4th Day of Christmas ...♫♫

... the Hyacynth Mum gave us showed its first bloom on Christmas Day; today it's well on its way to full gorgeousness ...

WISHING YOU A VERY HAPPY CHRISTMAS

Sue's home from the Hospice & here's the decorated tree, with lights ... Happy Christmas to you & yours, from us & ours :-D

Cat-Angel Tree Decoration

The Cat-Angel on my tree (showing in yesterday's post) came from Victoria Burnett Designs:
http://www.victoriaburnettdesigns.co.uk/products.html.

If you can't find it on the site, email enquiries@victoriaburnettdesigns.co.uk & ask for "Laura's Guardian-Angel" :-D

Dressing The Tree

Two decorations have gone on the tree ... more to follow when I've done my marking!!

Latest Test Results Through

She's got E-COLI, for goodness sake!! Whatever next??

♫♫ All I Want For Christmas ... ♫♫

She's back in the Hospice for "symptom control". I've put them under strict instructions to sort out those b****y symptoms quickly & get her home for Christmas!!

Hepatic Encephalopathy ...

... is very scary. It just comes on so quickly!! I hope she's more coherent tomorrow or I'll need to call the hospice again.

Ah Ha - Did It!!

Here's the "naked" tree, referred to below :-D

Getting Ready For Christmas

After 3 weeks in Guy's Hospital & 2 weeks in Marie Curie Hospice, Susan came home. The medical team have told her she's an "anomaly"; her cc isn't behaving at all as they'd expect it to. She's so well at the moment, long may her "anomaliness" continue!!

We bought a real tree this year; I've never had one before & I'm getting excited. Sue's planning to decorate it today while I'm at work. I've asked her to take photos of its various stages of dress. Here's the 1st pic of our "naked" tree in its new gold B&Q tree stand

P.S. The Blog App keeps crashing when I try & post the photo; I'll try uploading again later ...

Feeding time in Guy's Hospital ...

To see Guy's Donation Box in action, click this link http://www.youtube.com/watch?v=YKrEKAyi9gw

Valjee - from Cornwall, UK

It is with very great sadness that I must tell you that Valerie Mutton died on Thursday night. She was an amazing fighter whom I met on the CCF boards & was lucky enough to meet in person to celebrate her 50th birthday last year. Dearest Val, I don't know how I would have got through the last 2 years without you & your wonderful strength & humour. Rest In Peace, dear Val. XXX

The Twelfth Day in Guy's

Susan's stabilised.

Back In Guy's Hospital

They've drained 9 litres of ascites from her abdominal cavity since Tuesday & think there may still be a couple more litres to drain out over the next day or so.

She's lost just under 3 stone in the 5 days she's been draining.

B****y Rollercoaster!!

GrrrrRRRRRR ... GrrrrRRRRRR ... GrrrrRRRRRRRRRRRRRRRRRRRR!!!

Belated Update

It's been quite a rollercoaster summer (& I'm not talking about the weather ...) but we are both doing well. Actually, we're both doing VERY well, given the circumstances.

I'll update properly soon :-)

ERCP & After

After the scan & bloods were analysed, the Onc decided to proceed with an ERCP (camera down the throat & into the bile ducts ...) to see if there was any issue with the placing or condition of the stents.

We were told it would be a day-procedure, but I could have told them it would be a longer stay than that. Last time they had to fiddle with her stents, she was very ill indeed. This time wasn't so bad, but she still had to stay in overnight. Her lovely friend, Paul, took her in, stayed with her pre-&-post procedure & returned to collect her & bring her home the next day.

Since then, she's slept about 22 hours a day. It may be post-Chemo or post-ERCP fatigue, but it's very distressing for us both. I go into hospital for my 2nd TKR (total knee replacement) on Monday & she wants to stay here during my hospital stay & subsequent convalescence. I'm dreading leaving her here alone whilst she's so incapacitated.

Hopefully, she & her Mac Nurse (Dorothy) can come to some arrangement, which will reassure me & keep Susan's independence. I think Dorothy's due to visit again tomorrow.

CHEMO FINISHED :-D

We were the last to be seen, having waited 2 hours beyond her appointed time - but it was worth waiting.

After hearing about Sue's recent infection, the Onc suggested she stop Chemo now. She said 7 Cycles is good & missing the 8th won't compromise the benefits she's already received from the treatment - so stop now & let her body recover.

The Onc is sure the infections which keep clobbering Sue are coming from the stent, internally, rather than being picked up from outside. The Onc Team will talk to the Gastro Team to compare the North Mid's latest scan with Guy's previous scans & see if the stent needs changing. (Metal stents can't actually be changed, but they can be looked at, & cleaned/expanded as necessary.)

Now she's off Chemo, she's at less risk of these sudden, violent infections, although not totally risk-free. Once the stent's checked & sorted, the risk will reduce even further.

We'll know more in 2 weeks, when blood & scan results have been assessed by the Oncs, but tonight we can celebrate the start of a new period of stability.

Pre-Cycle 8 Onc Visit

I left Sue at the coffee bar when we got to Guy's, so she could get checked in, whilst I got the drinks (tea for me & freshly-squose orange juice for her - lol). By the time I got into Onc Outpatients, she'd already had her bloods taken & was off to be weighed!! Blimey, considering how long it took 2 phlebotomists to take blood from 10 patients last month, I was pretty gobsmacked.

However ... the speed of the pre-Onc tests has been no indicator of the clinic's turnover rate ... we're now an hour past her allotted appointment time & no sign of being called in yet ...

Home & Feeling Better

Susan came out on Wednesday afternoon, after a week in side room in the North Mid. For the last night, she'd been relegated back to the Tower, where she'd been for the whole of her 1st Norovirus episode. Fortunately, it wasn't such an awful experience for her this time.

When mum & I collected her, I really believed she wasn't well enough to come home, but after 24 hours' total disorientation, my lovely sister started to resurface from the shell of the seriously ill person she'd been.

She's watching a morning of back-to-back Time Team episodes in the other room now & life's getting back to our "new normal" ... Welcome Home, Sue ;)

40.3 is NOT a good number!!

14 hours' sleep ...

... works wonders :-D

LATER ...

They've decided to keep her in for at least one more night, as her blood pressure is so low. She's in a side room "for her own protection"; she'll hate that.

They're being incredibly thorough. Before I left this morning, they took her off the saline drip & put her on a mix of saline & potassium, as her potassium level was quite low. Then, this morning, they gave her a CT Scan & got in touch with Guy's Onc Dept. If Guy's want her transferred to them, North Mid will arrange it.

They're doubting it's a bacterial infection on this occasion but are suspecting either a reaction to last week's Chemo, or our old friend the Norovirus.

I'm SOOOO DIZZY!! I got home at 06:30 this morning & managed to sleep until 10:00 but I feel totally jet-lagged. Still, I always feel hospitals are foreign countries - with A&E Depts being on another planet entirely - so it's not really surprising.

Day 21: Cycle 7

Another spiking fever - her temperature shot up to 40.3 from a standing start in less time than it's taken me to type this. I woke to the sound of retching at 01:00 this morning & found her lying in vomit. It took me no time at all to call out the cavalry & get her to A&E.

It's 02:45 now; Susan's on an antibiotic drip at the North Middlesex Hospital with her temperature starting to come down; I'm surprisingly awake for having had only 1.5 hours sleep ... & 2 more paramedics are patrolling north London wearing CC wristbands.

Cycle 7 has started

It's only a week late, but it feels so much longer.

Sue wasn't feeling well this morning, but her bloods were "normal" (i.e. within acceptable limits) & the Chemo Unit said it was okay if she went in later, so she rested a bit more & then made her way to Guy's at London Bridge.

This is the penultimate cycle - & it's finally started :-)

Only one more cycle after this one :-)

Keep going, my lovely sis - you're doing soooo well & I'm soooo proud of you!!

Cycle 7: Day 1?

Susan's still not feeling well. I think she's been jolted by the low blood count diagnosis, too. Her white cells have never been a problem before.

Not sure if Cycle 7 will start today or be further delayed.

Will post later.

A Further Postponement

The hospital says Susan's "little soldiers" (I assume they're referring to her white blood cells) aren't functioning properly, so they're still reluctant to drip more toxins into her. They reckon a few more days should see her right, so she's going back for a further blood test on Wednesday, with a view to restarting Chemo on Thursday.

This morning she thought that any further delay would mean her treatment would never end, but now she's acknowledging that it's simply put the Chemo end-date back by (another) week.

She's coping well :)

Cycle 7 Postponed

She went to Guy's yesterday to start her penultimate cycle, but they've put it off until Monday, as she has another infection. She's back on antibiotics, so that should sort it out fairly quickly, but the delay has put her end-of-Chemo-&-Big-Birthday celebrations back yet again, which is upsetting for her.

On Monday, the Onc talked about putting her on a permanent low-dose prophylactic course of antibiotics to stop the constant infections. They don't want her to keep having to rush (or be rushed) to A&E either; they want to keep her from getting hospital-acquired infections in addition to the normal low-immunity acquired ones!! Oh blummin' 'eck!! - being treated has as many dangers as NOT being treated!!

Pre-Cycle 7 Check-Up

Nice, chilled journey to the Onc, as we had enough time to get the local Overground train (empty at this time of day), rather than playing sardines on the tube - lol.

We've had so many Bank Holidays recently that there are signs all over the place, warning that this afternoon's clinic is packed to the gills. Since it's usually a 1-2 hour wait on a "quiet" day, I dread to anticipate the wait we'll have today.

The odd thing is, there aren't actually very many people here but the Blood Test counter is moving sooooo slooooowly.

Sue's awaiting sign-off for Cycle 7, but it seems WEEKS since Cycle 6 ended. She's had a rough time this week but is looking much better &, overall, is feeling much stronger these days. The Chemo effect is really cumulative, though & she gets so, so tired really quickly.

We're all really looking forward to the end of this course of Chemo &, hopefully to my lovely sister having a GOOD length of time feeling well - & having a laff - again.

********************

It's been an hour's wait up to now & she still hasn't reached the top of the Bloods list!! There are 2 people taking blood - how can they take an hour to extract samples from 10 people??

Sisters, Sisters :-)

My lovely sister's BIG BIRTHDAY

Susan celebrated her significant birthday yesterday.  Her Oncologist had done his best to rearrange her chemo date so she had a chance of being nausea-free on her birthday, but it wasn't possible, due to a fortnight crammed to the gills with Bank Holidays (Good Friday, Easter Monday, Royal Wedding, Spring Bank Holiday ...)

So ... if she couldn't have a birthday celebration without chemo, she decided she wouldn't have chemo without a birthday celebration.

I bought her a big cake, parceled up some napkins, paper plates, forks & a knife & she took her birthday into the chemo unit & had a party there!!

Those of you who know me on Facebook may have seen the photos & will already know how successful this was.  I was afraid that some people may be offended at the prospect of "frivolity" in such a sensitive place, but no one was.  The staff & patients all shared her cake & wished her a very happy birthday.

She has asked me to thank everyone who has been so kind, empathetic & supportive since her diagnosis 18 months ago & particularly to thank those cc friends who posted birthday greetings on my Facebook Wall.

THANK YOU for making my lovely sister's BIG BIRTHDAY such a rip-roaring success.

BIG Birthday!!

Happy BIIIIRTHHHHHDAYYYYY to my lovely sister!!! :-D

Happy Easter!!

We had a lovely Easter, blessed with glorious weather & good friends. Thank you all. My sister (I'll give her a name now, for those who don't know - Susan) got lots of eggy things & I got none - serves me right for telling everyone I want to lose a bit of weight!! Still, she's a generous soul & shared some of hers with me - other bits I managed to nick when she wasn't looking, but please don't tell her that ;-)

North Mid A&E didn't find any infection on our last visit & sent her home, but when we saw the Onc at Guy's Hospital a few days later, he put her on more antibiotics, ordered an ultrasound scan & told her it was probably good ol' Krebsiella Pneumoniae again :-(

She had the ultrasound 10 days ago & the diagnostic medical sonographer (as Yahoo Answers tells me is the correct title of the technician who performs ultrasounds) said her ducts showed increased dilation on the left side of her liver, which could be the result of (a) stent movement (b) tumour growth or (c) tumour shrinkage, causing other organs to shift & prevent bile drainage.

He said she has a good blood supply to the liver & not much fluid in the abdomen, both of which are reassuring signs.

When Sue went for Chemo last week (Cycle 6; Day 1), a doc came to see her & told her not to listen to anyone other than an Onc, as the dilation shown by the ultrasound was actually exactly the same as last time ...

The bloods taken at A&E showed a bilirubin reading of 66 - clear jaundice level - but her pre-Chemo bloods showed Billy has dropped to 10 (which is far lower than mine & I'm supposed to be relatively normal!!)

Since last week's Chemo she's had a rough time & is feeling the effects of the prolonged toxicity. They drip more poison through her veins tomorrow - another 5 hours' worth, poor thing - & the added "insult" is that tomorrow's her birthday!! The Onc was brilliant & tried to change the day to Thursday, to give her a chance of having a nausea- free birthday, but with all the Bank Holidays over last week, this week & next week, there's no room in the Chemo Unit for her on any other day than her designated one. So we'll join her at the Unit tomorrow & we'll all celebrate her BIG birthday (yes - it does end with a zero!!) there :-D

Back in A&E

North Mid A&E is becoming rather too familiar to us lately. She's been doing pretty damn well, over all, but her temperature shot from 37 to 39 degrees within the space of half an hour this evening - so ... here we are again.

She finished Chemo Course 2; Cycle 5; Day 8 on Thursday (well, it was Day 9 actually, but her bloods got lost between the blood unit & the testing lab on the Wednesday, so they'd had to postpone treatment for a day). Oddly, it was after Cycle 5; Day 8 of Course 1 (February last year) that she had her first "episode", culminating in a dash to the North Mid, accompanied by wailing sirens (theirs) & projectile vomiting (hers).

We've been moved to an Examination Room & she's having her bloods taken (they seem to have found a vein at last; it's never as easy as they think it will be). She looks very pale & rather waxy, but her temp does seem to be coming down.

(My phone battery is running low - will conserve it & update later ...)

HA!! I've found a spare power socket in a corner & am sneakily "appropriating" NHS electricity to charge my little "lifeline to the outside world" :-D

... Back Soon ...

Scan Result

Cancer stable & tumour marker coming right down but she had another "episode" in Outpatients. They think the recurrent infections may be coming from the stents & want to see her next week before restarting Chemo.

She's exhausted & gone to bed. I'm shattered from the waiting & may be heading "up the apples" myself, before too long.

Good Night!! X

Scan Result Day

Fingers crossed. Will post later. X

AN EVEN MORE MASSIVE THANK YOU!!

Since my last post, donations have continued to flood in from Bloomsbury & Moorgate staff, reaching £325 in less than 48 hours. These donations, together with earlier gifts from family & friends, shot us up to our initial £500 target by mid-this-afternoon.

I'm finding it hard to find the words to express my delight & gratitude for all this generosity. A very big Thank You to everyone who has already contributed & to everyone who will still do so.

Yes - our first target has been smashed, but the fight still goes on. In fact, I've decided to up the ante by raising the target!! Sneaky, I know - but cc doesn't stop at £500 & neither should we.

Please remember to pass the link on to friends & family - let's show Cholangiocarcinoma that it made a big mistake when it decided to mess with us ... X

www.justgiving.com/cholangiocarcinoma

www.justgiving.com/cholangiocarcinoma

A massive THANK YOU to my friends at the College of Law (London Bloomsbury & London Moorgate branches). Over £200 donated in less than 24 hours.

You are such a brilliant bunch to work with. Thank you. X

BUMS!!

Last Feb she went down with the Norovirus - this year it's Klebsiella Pneumoniae (www.answers.com/topic/klebsiella-pneumoniae). It sounds vile & there's some dispute amongst the doctors at A&E as to whether she should be admitted & put on an antibiotic drip as an in-patient, or sent home with 2 courses of oral antibiotics. So ... she's been sent home, called back & now sent home again.

She missed Chemo last week, as she felt unwell, & now isn't sure whether she'll be having it tomorrow either.

I suppose we'll just have to wait & see.

It was another 999-job when her temperature shot up to 39.8 on Friday evening &, whereas last time she was completely out-of-it, this time she fought me - & the Ambulancemen - all the way. I think, in the end, they just sweet-talked her into taking a nice trip in a nice ambulance ... Scary to realise how easily we can be sweet-talked when we're ill!!

Still, by the time we left A&E at 2.00am, two paramedics & a night-shift A&E doctor were proudly sporting the Cholangiocarcinoma wristband & promising to help get our name out there :-D
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Onc Update

Approval given for Cycle 3 to start on Thursday. Then another scan to see how it's going.

Back At The Onc's

I'm sitting in the Oncology Department Waiting Room at Guy's Hospital. My sister's chatting to the lady in the Dimbleby Cancer Care Drop-In Centre. I can hear laughter coming from the room, which is very nice to hear.

She's back on Chemo, having been stable for 7 months. The Oncs are pleased that the Gem/Cis combination worked well last time, so they've recommended she have another 8 Cycles of that.

She's finished the first 2 Cycles (Chemo on Days 1 & 8, with Day 21 off & Day 28 being Day 1 of the next Cycle) & it's made a noticeable difference already.

She's just come out to get the cards I've made for our justgiving site. It'll be great if we can drum up more interest in - & the funds for - research into cc.

We've been called. Will update later.

Deep Sadness Around the World

Kris Jurgens (aka Devoncat), a truly wonderful woman from Kalmar, Sweden, died last night after a fierce battle with Cholangiocarcinoma. If you search the skies tonight & see a new & particularly bright star, that'll be her. Wave to her, please, & send her our love. She inspired so many people around the world. RIP, Kris. X

Good Lobby Result

I've just heard that last month's Cancer Research UK Lobby of Parliament achieved a victory for its early diagnosis campaign. £25million will now be made available in 2011/12 to help GPs get direct access to more tests to diagnose cancer.

I'm proud to have been part of this Campaign & am very grateful for all the support I've received from friends old & new. Looks like it may be a Happy New Year indeed!!

LaLupes is Fundraising for AMMF

www.justgiving.com/cholangiocarcinoma - My lovely sister has Cholangiocarcinoma, a cancer of the mucus glands lining the bile ducts. Bile is a fluid which helps us digest food - its main function is to break down fats in food - & the bile ducts are tubes which carry bile from the liver to the small intestine. Because of its "hidden" location - & the fact it's very rare - it tends to be diagnosed too late for surgery to be an option.

The cause of most bile duct cancers is unknown. My aim is to raise awareness of this rare cancer & raise money to fund research into its causes. Ultimately, I hope a simple test will developed so cc can be diagnosed at a much earlier stage.

I'm joining AMMF's fight against this disease for my sister & for everyone affected by Cholangiocarcinoma, whether as patient, carer, family or friend.

Please help AMMF - www.justgiving.com/cholangiocarcinoma

Thank you!! X

Cancer Research UK Lobby of Parliament

The Objective of the Cancer Research UK Lobby of Parliament on Wednesday 3rd November 2010 was to ask that doctors should be:

1. granted increased access to diagnostic tests &

2. asked to record accurate data on the Stage at which Patients' cancers are diagnosed.

Despite the London-wide tube strike, over 70 Ambassadors joined the Lobby. Taxis were provided for us at the main London Railway Stations, so I joined Jean & Jim (from Bingley) & Tom (from Sleaford) in a cab from Kings Cross to the Lobby Headquarters in Great Smith Street, Westminster.

The Ambassadors' briefing included talks from Harpal Kumar (Chief Executive), Sarah Woolnough (Head of Policy) & an ex-MP, Lord Willis of Knaresborough. The focus of these talks - &, indeed, of the whole day - was very much on Early Diagnosis.

Cancer is not one disease (there are 200 different types of cancer ... that makes 200 problems) & each cancer is individual, even within the same type. Cancer Research UK is the only UK charity dedicated to beating ALL types of cancer & gets no Government money. Only by funding research into both the rare & the more common cancers will everyone have a chance.

We were told the most powerful meetings MPs can have is with their constituents & that the Lobby should be about winning the hearts & minds of our MPs.

Although survival rates overall have doubled over the past 40 years, the UK's cancer outcomes are poorer than those of our international neighbours. Sweden, Finland & parts of Germany, France, Canada & Australia have better outcomes than ours. With the rarer "Unmet Needs" cancers (some examples given were; Oesophageal Cancer, Endometrial Cancer & Pancreatic Cancer), improvements in the survival rates are not so high. As we were told, "We've come a long way, but we still have a long way to go."

In the UK, 260 MPs have pledged to the Cancer Research UK's "Commit to Beat Cancer" campaign, to:

- detect cancer earlier
- provide world class cancer treatment
- prevent more cancers
- tackle cancer inequalities
- protect the UK's research base

There are so many different symptoms for different cancers & it is clear that we need to increase awareness as well as changing the culture which leads people to delay seeking medical advice; British reserve? We mustn't bother the doctor? - Pah!!

After the briefings, batches of Ambassadors congregated to walk across Parliament Square – past the entrenched anti-war protesters – towards the Palace of Westminster.

My MP, Lynne Featherstone (Hornsey & Wood Green), was not in Westminster on the 3rd, but a neighbouring MP, Glenda Jackson (Hampstead & Kilburn), was kind enough to agree to being lobbied by Lynne's Ambassadors as well as by her own. I found her rather intimidating initially (okay, I admit it - my nerves got the better of me & I froze momentarily) but she quickly thawed & proved to be a compassionate & gracious lady. She confirmed she was very happy to put our requests to Government, to write to the Secretary of State for Health & to table questions in the House on our behalf - but she was equally keen not to raise "false hopes".

The whole day was the most wonderful & inspiring experience & I'm so proud to have had the opportunity to be a part of it.

My greatest achievement? I got Cholangiocarcinoma mentioned in the Corridors of Power at least twice ... soon I hope no one will be able to say they haven't heard of it.

Cancer Research UK's Chief Executive, Harpal Kumar summed up the day beautifully; "Together, we WILL beat cancer".

(For a slide show of the Lobby, the link is http://www.cancercampaigns.org.uk/ambassadors/westminsterlobby/ )

The Lake District

As we're all having trouble flying at the moment, mum generously arranged for a timeshare swap, from her apartment in Portugal to a week in Cumbria. Then my sister took over the planning of our 'escape to the country'; she researched the train times & prices & organised a hire car. I was working at the weekend so she came up on the Saturday & I joined her on the Monday.

It was fabulous to be met at the station by my big sis, looking so relaxed & well, leaning casually on the door of a snazzy black car. She'd done some initial shopping, found the place & got us settled in.

She told me she'd slept for the 1st 2 days, but from the time I arrived, she was pouring out energy. We went to Keswick & were so lucky to arrive just in time for a free Working With Pastels Demo at the Cumberland Pencil Factory; even luckier, we got the last 2 tickets!! I have never been able to draw to save my life & it was so frustrating for me not to be able to translate what I saw the artist doing into something I'd be able to do ... but with a little personal guidance from the artist & his wife, it suddenly clicked. I'm seriously chuffed with the result, even if the best bits were the teachers'. My sis is a much better artist & hers looks great; I've decided they should be framed side-by-side as they look so alike & yet so (very) different.

After Keswick, we drove back via Ullswater. Wow, how beautiful it is!! I'm quite embarrassed to admit I hadn't realised we'd be located actually inside the Lake District; I'd thought we were staying NEAR The Lakes, not practically IN them.

That night it rained (but not too much) but the wind HOWLED - serious shades of Wuthering Heights (though, fortunately, no one scratched on the glass, begging to be let in).

Yesterday, we went to Thirlmere & then on to Grasmere. We visited Dove Cottage, where William & Dorothy Wordsworth lived, with Mary (William's wife), her sister & the 1st 3 of William & Mary's 5 children (they moved when Mary was expecting their 4th). Blimey it was small & dark. It is said to have inspired Dorothy's Journals, William's Poetry & Coleridge's, too - but all it inspired my sis & me to do was get outside into the daylight as soon as possible. (I read that Dorothy suffered severe depression; I'm hardly surprised.)

We'd actually planned more of a rest day for today, but it's been forced on us anyway by the nasty bout of nausea, chronic fatigue & perpetual sweating which has knocked my poor sister sideways all day. Yes, she must have done much too much over the past 2.5 days, since I arrived - but it's been brilliant ... & we still have 2 days left.

I took the car out this afternoon & went to the nearest village for supplies. It's called Greystoke, but though I looked & looked & looked ... I didn't see Tarzan anywhere ...

2 Month Follow-Up

We went to see the Onc today. All very good news; cancer stable. The fact she's still well 3 months after Chemo is a very good sign & the longer they keep her off Chemo the better (as it means the Chemo has worked very well & opens more options). They'll see her in 3 more months.

I think I've been worrying about this more than I'd realised. I'm so tired now!!!

But very relieved, too :-D

It's Been A Year!!

The 1st anniversary of my sister's admission to hospital, with a suspected "severe penicillin allergy", passed last week. Next week is the 1st anniversary of the 1st time the Big C was mentioned.

On August Bank Holiday - a mere few weeks hence - we'll reach another 1st ... the day they added another C into the mix & we read Cholangiocarcinoma on her Release Form, when I took her home on a 24 hour Pass.

A Year.

She went home on Thursday ... Home to her own flat after more than 10 months here with Laura & me.

I feel weird ...

11 Weeks Post-Chemo

Well, more roller-coaster rides since I last wrote, but she's gradually getting the accumulated poison out of her body & is steadily looking - & feeling - better.

Slowly, slowly, slowly.

We've had some fevers & some nausea, vomiting, sweating & chills, but the progressive improvement is clear.

We saw the Onc for her post-chemo scan results & then for her 6 week follow-up & he was very pleased with her results; peritoneal mets can no longer be seen & the main tumour hasn't grown since the baseline scan. If it starts growing again in the longer term, they'll try this regime again; if in the shorter term, they'll try something else. He made it clear that this chemo is only one option, not the only option.

I like that man ... & I'm very, very proud of my sister.

P.S. - UK Election Day

It's both the General & Local Elections, today. I made sure I went to vote, but it's exhausting trying to save the world on your own, so I'm off to bed now. ;-)

Post-Chemo Scan Day

Scary day.

I couldn't go with her to her scan appointment & she was sure she'd be fine going alone - after all, a scan is, of itself, a mere walk in the park ...

BUT ... there was a man in the waiting area who was on his mobile, describing the size & location of all his secondary tumours - & the short prognosis he'd been given ... & this (understandably) freaked her out!!

When she got back, Laura somehow managed to lodge a claw in the needle hole left from her latest blood-test & this proved to be the final straw - my poor sis just dissolved.

She's massively over-exhausted & is sleeping now.

(Laura hasn't quite recovered from her shock either.)

Tomorrow is another day & I hope they'll both feel better after a good night's sleep.

May Day

Fever's gone!!! :-)

Birthday Week

It was my sister's birthday earlier this week & we went to Charles Worthington to have our hair cut for a birthday treat. We couldn't stay out long, as she's been feeling sick ever since her last chemo & she had to get home to bed.

She wasn't given her usual supply of steroids after her last infusion & the doctor forgot to include any in the emergency prescription the Mac Nurse asked him to provide. I don't know how much the lack of the steroids has affected her, but she's never been too much affected by post-chemo sickness in the past - & certainly not this long afterwards.

It's over a week since her last chemo & today she was very sick & had a fever :-(

LAST CYCLE - LAST DAY (Part 3)

All well. She's home & in bed. Tired, rather pale & a bit wobbly on her legs, but relieved to be back & to have got through this 6 months so well.

Looking back at the Norovirus incident, it's quite hard to remember how ill she was & how much she dreaded continuing with the chemo. It's taken a hell of a lot out of all of us, but we've all survived it.

Scan is 6th May, then Onc's analysis on the 10th.

Fingers crossed!!

LAST CYCLE - LAST DAY (Part 2)

Ooooh ... She's got a Custard Doughnut & a Cherry Danish for us to share!! FAB!!

LAST CYCLE - LAST DAY (Part 1)

Sitting on the 10th floor at Guy's. Bloods taken, tested & approved. Chemo ordered. Sis has gone downstairs to get me a biscuit. (Hope she decides on an Almond Croissant instead). :-D

WOW - IT WORKS!!!

Yay - no stopping me now!!

Off to meet Val from CCF this afternoon ... am getting very excited. (Must make sure I have a good supply of photos of Laura to show her - she's a cat fiend, too, by the sound of it.)

Sis is doing well well today & is DETERMINED nothing will come between her & her last chemo tomorrow.

Fingers crossed for a good day, a good week & a good follow-up scan on the 6th.

Pre-Last-Cycle-Last-Day!!

Just testing that my web-blogger app links to my blog (a) so I can be sure I can update from the Chemo Unit tomorrow & (b) because I still like playing with my new phone ... :-D

Day 1 - Last Cycle

It was damned hard to wake her up this morning, but we got to the hospital just as her bags of Gem/Cis were being delivered. The Chemo Unit is on the 10th floor of the hospital & the sun was pouring through the windows as they set up her cannula & IV.

Another friend is due to visit the Unit this afternoon & will ensure she's okay getting back at the end of today's treatment - so I left her, happily giving encouragement to a little baby girl who was just learning to stand & was attempting to take her first steps.

Now I'm home, I really should get down to prepping for tomorrow's class (I'm teaching at 9am) ... but, as I said, the sun's pouring in the windows & I'd much rather be doing this ... !!

Pre-Cycle 8 Day 1

Tomorrow is day 1 of my sister's last scheduled chemo Cycle. She's doing so very, very well but is feeling rather nauseous tonight. They call it "anticipatory nausea" & it's very well known. She's sleeping now. Goodnight, sis. See you in the morning. xxx

Excited Post-Script

WE DID IT - not only did we reach our goal of 2,500 fans for the CCF Facebook page by the end of March, we exceeded it!! 3,000 fans in one month!! Wheeeeee!! CC now has a massively increased public profile. Thank you to everyone. xx

End of Easter Break

Uh oh, I've gone all quiet again. Have just about pulled myself through my latest rough patch (with help from my lovely sister, mother, friends - thank you all).

Back sooooon!!! xx

CC Awareness Stickers

If you're on Facebook & you want to add a CC Awareness sticker to your profile picture, go to:

http://apps.facebook.com/fribbon/group.php?gid=5533&refer=pp

(There are 3 CC stickers to choose from - if you'd like to use a different one, click on "Find a Sticker" along the top & type "Cholangiocarcinoma" in the search box)

If you want a "physical" sticker, you can get one from CC Foundation's online store:

http://www.cafepress.com/cc_foundation/

Thank you - I look forward to seeing even more CC stickers on Facebook profiles & car bumpers!! :o) :o) :o)

Cycle 6 - Day 19

We're on the train, heading back from the hospital. The Onc is pleased & has booked her in for Chemo Cycle 7.

All going well. Phew!!

Spring's Arrived - & Marking's Finished!!!

I've had my head down, marking like fury, for weeks - but it's done now. All that's left to do is seal the boxes & call the courier to collect.

YAY!! :-D

I've finally managed to wrench myself away from the CCF Fan Page on Facebook, too ... I can't believe the rate at which fans are piling on there - it's BRILLIANT!! 61 new people joined whilst I was asleep last night (& 51 the night before) - PLUS those who join during the day. Of course, fans are arriving from all over the world - so we're all in different time zones - which adds to the excitement of it all.

We've nearly reached our initial 2,500 goal & it's showing no sign of slowing down. Fan-Tas-Tic!!!

We're off to see the Onc this afternoon, for her pre-Cycle 7 assessment. 2 Cycles to go. 4 more chemo days in all.

She's had so much energy since she recovered from the Norovirus that we're really optimistic that the treatment's really working!!! Fingers remain firmly crossed.

Kris, from CCF, is in surgery at the moment in Sweden. All my VERY, VERY best wishes to you, Kris. I'm sending LOADS of positive thoughts & hugs & good vibes to you & your family for a spectacularly successful outcome.

CCF has a Facebook Fan Page!!

If you're on Facebook, please come & join us by becoming a Fan!!

http://www.facebook.com/pages/The-Cholangiocarcinoma-Foundation/332378771195?ref=ts

See you there!! :-D

6 weeks later ...

Saw crocuses yesterday; could Spring be on its way at last?? Pleeeeeese!!

We've all had a rough few weeks. I really want to get back online but everything feels rusty (& that includes my typing fingers & my blogging brain).

Thank you to EVERYONE who's been so supportive - friends, family & my new extended Cholangiocarcinoma Foundation family, too - your messages of support have been so wonderful & have helped me log in here again today. I'll be back to talk to you all again very soon.

My sister says thank you to you all, too. (We're off to see the Onc again tomorrow to see if she can start chemo again later this week. I'll update asap.)

Love from LaLupes xxx

Thursday - 3 weeks into the New Decade!!

Gosh, it's been a long time since I updated!! The weather's been having a field day recently ... we've been snowed under, iced in & rained on over the past few weeks. As a result, I've got lots of additional work lined up, as College catches up with the scheduling disruption caused by having to close for 5 days.

My sister was very worried about Cycle 4 Day 8 (2 weeks ago) as Day 1 had been so bad - but she sailed through it (relatively speaking) & the past 2 weeks have been pretty good. It was Cycle 5 Day 1 yesterday & she seems to be coming through that reassuringly well, too. She's a bit puffy & has very warm rosy cheeks today but no temperature.

She had the weirdest 24 hour bug about 10 days ago - her temperature spiked at 37.5 but it didn't go any higher than that, thank goodness (at 38 degrees, she has to go to A&E) & she was literally streaming with cold & sweat. But the next day there was no sign of it. Last week, I went down with one, but mine's dragging on & has gone to my chest, which is a nuisance, as I keep waking myself up coughing in the night :o(.

We saw the Onc on Monday & she explained my sis' Baseline Scan results to us:

1. Lungs look clean (no metanasties - Yay!!!);

2. Location of primary tumour makes it hard to measure but they were able to measure one located between one of her stents & the neck of her pancreas, so they'll use that as a benchmark next time;

3. Peritoneum shows spots, which will also be measured & monitored.

She'll have another scan before her next Onc visit ... we both find that a scary thought ...

GREAT news, though - she was told yesterday her bloods show her tumour markers are coming down ... Wheeeeeee!! I'm so PROUD of you, sis!!!

I was due to meet another member of our CC family (from the CCF) at the beginning of Jan, but her visit had to be postponed due to the snow. That was disappointing but I hope she'll come in Feb instead & I can catch up with her then.

The garden's been full of birds this morning & I'm optimistically hoping for an early Spring ... I absolutely LURVE Spring!! (Come on you snowdrops, crocuses & bluebells!!)

:o) :o) :o)

New Year's Day!!

HAPPY NEW YEAR, everybody!! 2010's been great, so far ... long may it continue to be so!! :o)

She had a really rough chemo session on Wednesday - that was Day 1 of Cycle 4. All seemed to be going smoothly & she even got out early, but she fell asleep on the bus coming home & just felt progressively worse as the evening went on.

She was due to go with friends to Hastings the next day, to see the Blue Moon, which was scheduled for last night (no, I hadn't thought they existed, either - but they do!!). Until about 11 o'clock yesterday morning, it was still touch-&-go whether she'd be well enough to make the journey. Thank goodness for her friends, who had arranged everything so she could sleep in the car going down - & for the whole visit, if necessary. They bundled her into the car & off she went.

She came back this afternoon positively GLOWING - & full of stories of the sea & the sky & the stars & the fireworks & the moon & ... & ... & ...

I, on the other hand, stayed in London & slept through the whole thing. :o)

What a lovely, lovely way to say goodbye to one decade & hello to the next ... fast asleep. No blurring of the boundaries by being awake at midnight; no hangover to start the new year.

Bliss.

I hope we all have a great year - as happy, as content & as healthy as we can be.

xxxx

Christmas Day!!

We've had the most lovely Christmas Day. Lunch was wonderful - home-made leek & potato soup to start, then honey roast gammon, REAL baked potatoes (oven, not microwave), sprouts, parsnips & carrots. My sister did the cooking; mum & I fought over the washing-up. I won.

Then ... Doctor Who.

I haven't updated this blog for a while - but I'm pleased to say that's a sign that all's progressing well. The whole of the 3rd chemo cycle passed smoothly. Her energy levels fluctuate, but in general they're pretty-damn good. It was great to hear that the chemo hasn't affected her taste this time round. The prospect of that wonderful lunch tasting of metal just doesn't bear thinking about!!

We had very sad news earlier in the week when we heard 2 of her friends from hospital hadn't made it to Christmas. They were both so very ill & neither was a candidate for chemo. Dear Rosa; Dear Janet - you are very much in our thoughts. Our love to you & your families.

We saw the Oncologist on Wednesday. She was very pleased with how well my sister is tolerating the treatment & has given her the go-ahead for Cycle 4 to start next week. There had been talk of it being put back a week, as the Onc didn't think they'd be able to slot in her follow-on appointment before the new year & the next cycle can't start until after the Onc has seen her. I'm very glad there won't be a break in the cycle after all.

I've been very busy with teaching cover over the past few weeks & was very pleased with my pay-cheque this month. Work should drop off dramatically in the new year, so it's good to have that extra cushion in the Bank. Mind you, I wasn't expecting any work at all this academic year, so maybe I shouldn't make any assumptions for the new year; I'll just sit back & see what work the colds & 'flu seasons throw my way.

Happy Christmas to everyone. I hope your Day was as lovely as mine. xxx

Day 1 of Cycle 3

Today's chemo seems to have gone well. She's awful tired but doing really well.

Thursday Evening - Start of Party-Season!!

This has been a MUCH better week.

The taste changes my sister has been experiencing came through quite strongly during the early part of this week, though - nothing tasted nice at all. She kept asking if my food was completely tasteless, too - but nope, mine wasn't.

I did solve part of the "anything mint-flavoured burns my mouth" problem, though - I bought her "Punch & Judy" children's toothpaste (both the Strawberry & the Tutti-Frutti flavours) & it works!!! (Sadly, Sensodyne also has mint-flavouring, Jean. I couldn't believe it when I saw that ... even their children's version does.)

We both had Swine 'Flu jabs on Monday - sis has to have TWO, because of her weakened immune system & I had to have one, as a Carer. My whole body turned to lead & I felt absolutely lousy for 24 hours. I'm much better now, though & we're off to a neighbour's birthday party in our pre-Christmas glad-rags.

I had a great afternoon, bra shopping. There was a lovely fitter in the M&S changing room who - very diplomatically - pointed out that I was wearing the wrong bra-size. After being properly fitted, I feel very svelte & chic. Gok would be proud of me!!! :o)

Yesterday, when I was suffering post-'flu-jab lethargy, sis made a wonderful meal - with Mash & Red Cabbage - & was over the moon when she found she could actually TASTE it. Brilliant news!! Maybe the numb tastebuds are an immediate post-chemo side-effect, rather than a long-term problem.

Another brilliant highlight of this past week was talking to Pauline from the CC Foundation. It was fantastic to talk to her & hopefully, we'll meet after Christmas & try & do something together to sort out the lack of communication about CC at the specialist hospitals. There are such wonderfully supportive people on that marvelous CCF website, all spiraling along the same sod-awful emotional roller-coaster, & it makes me feel much less alone knowing they're out there.

Bless us all ... xx

A Gusty Monday Afternoon

Blimey - what's the weather doing today?? She's just set off for the tube (on her way for an aromatherapy massage at the hospital) & she was almost blown down the road by this incredible gust of wind!!

It's stopped raining for the moment, though, so I may be able to get to work without being drenched ... if I'm lucky!!

Late Saturday

I needn't have worried - a brilliant evening, with brilliant mates. I feel much better tonight :o)

Saturday - Day 4 of Cycle 2

It's been an upsy-downsy week; that's the way it goes, I suppose.

We went to see the Oncologist on Monday & she's put on 11lbs since she last saw him. The Dietitian was very surprised & very pleased & the Onc said: "if the cancer's really bad, it's often impossible to gain weight", so that sounds promising. (She has understandably mixed feelings about the weight gain, but she certainly looks good!!)

The Onc asked her if she's started losing her hair yet ... that "yet" was a shock as previously everyone on the medical teams has said she isn't expected to lose it. He said she's unlikely to go bald but she will experience hair loss within the next week or two. That did come as a blow to her & a surprise to me, too.

He was able to throw some light on the cold damp nose she's been experiencing since she came out of hospital. He said cancer itself can cause sweats & the chemo drugs also cause thinning of the mucus membranes.

The visit was very hard on us both; even though he told us stuff I'd known before, it was still like hearing the diagnosis afresh, over & over again.

Cycle 2 started on Wednesday & this time it was clearly a bad experience for her. She felt very, very low - even despairing - all Wednesday evening. She's been coping well since Thursday, but there's no repeat of the hyperactivity she had after the last cycle. She's just tired & very subdued. An additional side effect, this time, is a general puffiness in her face & hands.

She talked to the chemo nurses about the hair loss & they said again that she won't lose her hair. When she told them what the Onc had said, they just shrugged & said: "Huh - Doctors!!" Although that sounds comforting, these constant contradictions actually make things worse.

She's experiencing taste changes, too; she said anything mint flavoured burns her mouth (& both toothpaste & red wine are as fiery as a hot curry). I'm surprised as how hard it is to find toothpaste without mint in it.

I'm going out this evening with some diving friends & it's just starting to dawn on me that I've forgotten how to make small-talk!! I hope the skill comes back quickly, or there's a strong risk of me putting a damper on the evening ... or Lor' - I hope not!!

Friday

I'm the one who hit the wall, today - & I'm not even on chemo!!!

Thursday of Chemo-Free Week

She's on her week off chemo this week & we've had time to sit down & consider the trends:

Day 1 = Chemo

Days 2-4 = 3 days of hyperactivity

Day 5 = 1 day coming down from hyperactivity

Day 6 = 1 day of narcolepsy

Day 7 = 1 "fairly normal" day

Day 8 = Chemo

Days 9-11 = 3 days of hyperactivity

Day 12 = 1 day coming down from hyperactivity

Day 13 = 1 day of narcolepsy

Day 14 = 1 "fairly normal" day

Day 15 is the start of the chemo-free week & we're on Day 16 today. Chemo starts again next Wednesday, which will be Day 22 of Cycle 1, or Day 1 of Cycle 2, depending on which way you look at it.

I'll keep an eye on the trends & see how they continue.

She's had AWFUL stomach gripes over the past few days. I'm not sure what they're linked to, but it does seem pretty likely that the hyperactivity is linked to the steroids she's prescribed for the 1st 3 days post-chemo, to increase the efficacy of the anti-nausea meds.

I've had a LOT of work this week & am really, really tired. I'm also suffering retail-therapy withdrawal symptoms. I need to get shopping again. I know I don't like clothes shopping (clothes just don't interest me), but Primark has just opened in the Mall. I really think I should go & explore it as soon as I've had enough sleep to enable me to face the crowds.

Sunday

Ooooohh - I have new followers!! This is exciting!! Welcome to you both. :o)

The hyperactivity disappeared when her 3-days' supply of additional (post-chemo) anti-nausea meds had been used up. They're steroids, apparently. I know she was told they may disrupt sleep & cause her to eat like a horse but, as she's not eating inordinately more than usual, we hadn't made the connection between the hyperactivity & the tablets.

She hasn't hit the wall recently, though, so maybe there's still some working its way through her system.

She's doing well & looks terrific. Brilliant!!

Friday - Chemo Day 10

2 days post-chemo & a new side-effect has become apparent ... HYPERACTIVITY!!! :o)

She's talking 19 to the dozen & has been gardening, cleaning & tidying - all at the same time. It's great to see such energy but we're waiting for the "chemo wall" to come up & hit her over the head again.

She says she feels so well at the moment - which is absolutely WONDERFUL. Long, long, long may it continue.

[p.s. The TV is fab, fab, FAB]

Thusday Evening

The telly has arrived & was set up with lightening speed by the lovely guys from my local Sony Centre. All I need now is for the quality of the programmes to be improved so I'll have something good to watch on that gorgeous flat screen!!!

Thursday - End of 1st Chemo Cycle

Yesterday was Day 8 of Chemo Cycle 1 & seems to have gone very well, although it took longer than Day 1 (6 hours instead of 5). I couldn't go, 'cos I was teaching 9.00 - 2.30, but Franco went with her.

It took 5 attempts to get the cannula in this time (it looked soooo easy last week) as her veins hid whenever a needle came near, so Franco's attempt to teach her to crochet had to be aborted as every time she twisted her wrist to regulate the tension of the cotton, it set her drip alarm beeping.

But some BRILLIANT person did the Race-For-Life recently & donated 4 portable DVD Players to the Chemo Unit, so sis & Franco watched DVDs, chatted & giggled.

They don't have many DVDs, though - so if anyone out there has any to spare, please donate them to the Guy's Hospital Richard Dimbleby Day Centre & earn the patients' (& visitors'!!) eternal gratitude.

My new TV is due to be delivered this afternoon, then tomorrow I pick up the new lamp - I'm getting excited. This retail therapy lark is quite fun!! :o)

Sunday Evening

To appropriate a line from the Macmillan campaign ... Today was a good day.

We did some major furniture shifting & reorganising of rooms & we're both happy with the way the rearrangements have worked out. Mind you, buying lighting this afternoon & moving furniture this evening has rather wiped me out ... so early bed!!

Starting tomorrow, I've got 3 weeks work, covering an absent colleague. I'm not good at getting into the classroom, bright-eyed & bushy-tailed, for 9 o'clock starts but it'll pay for the new bed, new television & new floor lamp ... oh, & hopefully for whatever I'm going to buy myself next week, as well ... ;o)

Goodnight!! xx

Sunday - Chemo Day 5

Apparently it's very warm outside but it's BUCKETING down, so I haven't ventured forth yet.

Her Fortisip had a slight metallic taste today - it's just the vanilla ones which have been affected by "chemo-mouth" so far, but that could be a problem ... she was given 2 months supply of Fortisip last week & all but 4 of the bottles were vanilla flavour (that's 44 metallic flavoured Fortisip to get through ... UGH!!)

I'm off to Angelo's Lighting this afternoon to buy myself another present.

Saturday - Chemo Day 4

She has flutterings in her throat, breathlessness (but no significant increase) & the feeling that the tumour is growing ... it all sounds absolutely VILE but is fully in keeping with the Mac Nurse's warnings.

It's the tiredness which seems most debilitating, but EVERYONE says that's to be expected!!

I missed WeightWatchers this morning; I decided a sleep in would be more beneficial. ;o)

Friday - Chemo Day 3

We're into a new phase now; chemo has started. Today hasn't been brilliant but, over all, it's "so far, so good".

We met her Oncologist last Monday, then her Chemo Nurse (Hannah) this Monday & she went to be pumped full of toxic chemicals two days ago. When her GP told her she'd be "pretty busy" once Chemo started, I wasn't aware quite how literally he meant it.

She's on a 3-week cycle: Gem/Cis on Day 1 + Day 8 & then 2 weeks off (which, basically, means two Wednesdays on & one Wednesday off).

The treatment took 5 hours in all;

1. Water Tablet

2. Saline drip (half hour)

3. Anti-nausea meds

4. Gemcitabine drip (half hour)

5. Saline flush

6. Cisplatin drip (one hour)

7. Saline & mineral drip (one hour)

8. Home until next time

She said she felt nothing during the treatment & has been feeling pretty okay (apart from exhaustion) since then. Today was the first time she talked of nausea, some tingling & a bit of tinnitus.

It's all so new & so scary, but at least the treatment's started & we're on our way.

... & how am I?? ... I bought a new television (retail therapy never did anyone any harm & I'm not interested in clothes). I wonder what I'll buy next week ... ;o)

Teaching Weekend - Saturday

She's now put on an overall 1.5kg, since she came out. I was sooooo ungruntled with my own eating pattern yesterday, that she bought me a handful of Thorntons' Continental Chocs to comfort me. Some of you may consider that cruelty in the extreme, but she did succeed in cheering me up no end & I lost 0.2 kg on them; I'm now back under my acceptable limit of 5lbs over Gold.

PHEW!! Thanks, honey ... & bring on the Thorntons!!! :o)

Poll: Cholangiocarcinoma Awareness Month

Here's the link = Poll: Cholangiocarcinoma Awareness Month - click on it & vote!!

Wednesday

She's put on a WHOLE 1.1kg in the past 2 weeks, after eating chocolate (belgian, of course), ice-cream, pizza & drinking whole milk, lucozade, full-fat Lilt & 3 x Fortisip per day.

I've put on a least 3 times as much in a shorter period, after living on air & optimism.

Laura?? Don't know - but she was damned heavy sitting on my bad leg all night ...

GOOD MORNING, WORLD!! I'm actually much happier than that message sounds!! :o)

Another Monday's Arrived Already!!

I can't believe another teaching weekend is creeping up on me & I still haven't posted since the last one!!

It's been two whole weeks since she came out & she's doing well; we're all doing well, in fact. In many ways, the trickiest bit has been the fact she's under doctor's orders to regain the weight she lost in hospital - but, however hard she tries, I seem to be the one who's putting it on!! She does find it rather ironic that she should be ordered to eat for England, after all the money she spent at WeightWatchers getting her weight down in the first place, but she did lose a lot during her stay in hospital & appreciates the need to increase her energy levels before starting chemo.

I, of course, have no such reason to pile on the pounds - &, if I don't stop trying to match her intake, I'll have to start paying at WW again. I've been at my Gold weight for 2 years without ever being charged - & last week I was RIGHT ON THE BORDER ... one more measly ounce & it'll start costing me again. If that isn't an incentive, I don't know what is!! :o)

My new guest bed arrived last week & it is - without a doubt - THE most comfortable bed I've ever owned. I've been sleeping like a log every night since I got it. I had to go & buy a set of Allen Keys to put the headboard on, but - wha'th'hell - it's GORGEOUS. I'll forgive any little niggle for the sake of a good week's sleep.

Talking of sleep, Laura's started to divide her nights between my sister's bed until the early hours & then mine until I get up. The only problem with her choosing this particular arrangement is that, when it's my turn for her company, she doesn't walk round the bed to get to her chosen sleeping spot, she walks straight across me. At 4am, it's not the most restful experience to be trampled by an adult cat who is putting on weight at the same rate as her human!!!

Oh well, my new bed is calling me. I'll try & post again soon. Night, night all.

Saturday - & October Already!!

Blimey - it took FOREVER for my legs to stop aching after the teaching weekend; I had to up my painkillers in the end, which has left me feeling queasy. Hrrrumph!!! GRRRR!!!

H-O-W-E-V-E-R ... we have some GOOOOOOD news, too. She's OUT. The docs did the ward-round on Monday & said "you can go". In NHS terms, of course, it doesn't actually mean you "can" go ... it means "begone & free up this bed forthwith, if not sooner".

So, within hours of being told to begone, she bewent ;o)

And here she is - & it's SO GOOD to have her here (if a little disorientating for all 3 of us - sis, me & Laura, who's not sure whose bed to curl up on at the moment).

My new guest bed arrives on Monday. I saw it online & phoned to get some more information on it & was very impressed with the guys who run the website. When they heard why I'm buying such a good (& by no means cheap!!) foldaway bed, they did everything they could to expedite delivery. In the end, I had to reassure them that I'm not actually sleeping on the floor at the moment - I have a perfectly decent sofa bed already - I just want one upstairs which is more for "permanent" use, rather than having to make up the downstairs sofa bed every night & put it away every morning. They phoned me yesterday & said it's arrived from the warehouse, so they'll bring it round on Monday morning.

Ooooh, I can hardly wait!! I so love gadgets!! :o)